In this episode of The Disability Download, Selina Mills chats to disability rights campaigner Judy Heumann about writing her memoir, International Women’s Day and her new documentary film on Netflix: Crip Camp.
Crip Camp documentary and memoir (01.51 – 15.23)
International Women’s Day (15.26 – 22.52)
Leonard Cheshire and international work (22.55 – 24.03)
Crip Camp debuts on Netflix in the UK on Wednesday 25 March.
Check out the trailer here: https://www.youtube.com/watch?v=Fs0VRfOg7Wo
For International Women’s Day, we’re challenging stereotypes of what disability looks like in our #DisabledLooksLikeMe t-shirt campaign. Find out more on our Everpress site.
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International Women’s Day – Judy Heumann special
Intro music
Judy Heumann: Young people should not be waiting for permission from older people to do something. One of the reasons I think it’s a very powerful film is because it brings together the voices of disabled individuals who were at the camp as we move forward in our lives.
Cathy Lynch: Hello and welcome to The Disability Download. The Disability Download is brought to you by pan-disability charity Leonard Cheshire. I’m Cathy Lynch.
Erin O’Reilly: And I’m Erin O’Reilly and on this podcast, we respond to current topics, share stories and open up conversations about disability.
Cathy: To celebrate and acknowledge International Women’s day, we bring you a very special episode of the podcast, we have an exclusive interview with world renowned disability rights campaigner and Leonard Cheshire Ambassador, Judy Heumann talking about her new documentary on Netflix: Crip Camp.
Erin: But, before we launch into the podcast, for those who don’t know who Judy Heumann is, we thought we’d give you a whistle stop tour of her career.
Cathy: Judy is a campaigner and studied Speech Therapy at Long Island University where she would organise rallies and protests. Judy came to prominence in 1970 when she sued the Education Board of New York City for discrimination when she was denied her teaching license on the basis that she was physically unsuited for teaching.
Erin: So when it was likely the Board of Education would lose, they settled out of court and then Judy became the first wheelchair user to teach in New York City. Since then, Judy’s international policy and advocacy work has made her one of the most influential disabled people in history, most notably, she’s worked for the Clinton Administration in the Department of Education and also as a Special Advisor on Disability Rights for the US State Department for the Obama Administration.
Cathy: So we have our special reporter, Selina Mills in Washington, take it away Selina.
Selina Mills: So I’m sitting here in Washington D.C. at the home of Judy Heumann, our Leonard Cheshire global ambassador and amazing activist and disability rights campaigner, and currently film star!
Judy: I just came back from Sundance, which I have never attended before. Sundance is a major film festival and friends of mine have produced a film called Crip Camp. It’s a great documentary on the history of the movement significantly in the United States and it’s launched by footage that was taken in 1971 by a group of disabled campers. And it was in 1971, and I was working at the camp that particular year but had been a camper there for numbers of years earlier, and it showed four times while I was at Sundance. And to such amazing acclaim, standing ovation the first night for five minutes. Every night, a standing ovation!
Selina: How did that make you feel, just seeing the reaction of the audience?
Judy: I felt really proud for my friends. I was, in the film I’m a prominent role, I play a prominent role in the film as do a number of other people. But at the end of the day, if there wasn’t the quality of thinking behind what the film should be it kind of wouldn’t matter who the talking heads were. Being able to have really brilliantly thought out film, with great historical information and then good people who were telling the story and people with different types of disabilities. The reaction of people in the audience I would say was significantly around why don’t we know this story?
Selina: Do you think such a camp could exist now or do you think it’s all such a different state of play now that it wouldn’t work in the same way?
Judy: I mean I think the camp could work in the same way. I think the discussion that goes on now is what do you think about a segregated camp? So I could see creating a camp that is bringing teenagers together with the sole purpose of allowing people to have time together, do various things together, think about where they wanted to go. Also looking at barriers that existed in their lives and do strategic thinking, I think that would be great. I think not all camps were like Camp Jened at all. So I think Jened it’s not the only, but it was a unique camp, but unfortunately, it’s closed. And counsellors and the leadership at the camp were hippies.
Selina: I can’t wait to see it actually! I haven’t got an advanced copy yet, so we will definitely let you know what we think over in the UK.
Judy: One of the reasons that I think it’s a very powerful film is because it brings together the voices of disabled individuals who were at the camp as we move forward in our lives. And therefore, brings in a lot of footage about Section 504 demonstrations.
Selina: Tell us in England, in the UK rather, what is section 504?
Judy: So, there was a law passed in the United States in 1973 which has a provision called Title 5. Which is really anti-discrimination and affirmative action requirements. And one of the provisions is something called Section 504, which was the first piece of legislation that was a meaningful piece of anti-discrimination legislation. That said, says, any recipient of money from the federal government may not discriminate against one based on disability. And there are many many many many pages of regulations, and when the law was finally signed in 1973 it was taking many years for the government to finally promulgate the final set of regulations. And there were demonstrations the United States, across the United States, in April of 1977 when the Carter Administration, President Carter, had been elected and we’d been told that regulations were going to be signed. And basically, we learned that the government was reviewing the proposed regulations with the eye on making changes. And we across the country had really decided, through an organisation called the American Coalition of Citizens with Disabilities, that we were not, we were really going to fight against any further changes. And so all of this story is told with great footage, not only from the camp but from the 504 demonstrations in San Francisco. And then, when a group of 20 of us went back to Washington D.C. to work with the American Coalition of Citizens with Disabilities, great footage with the Secretary of Health, Education and Welfare, and people are demonstrating in D.C. also. It’s a really powerful film that will stand the test of time because it’s so well documented.
Selina: So do you think this was a major turning point, this period of history when people were actively campaigning for disability rights or do you think it’s a collection of turning points that sort of then came together?
Judy: Like in any movement, there are many turning points. And so there were many aspects of what was going on in this time period between 71 and well a little till today, but through to ADA, and the film itself can only highlight certain aspects of it. So for what the film is, it’s a tremendous piece of history. The film for example doesn’t cover much about what’s going on in deinstitutionalisation although there was a big expose in New York City with an institution called Willowbrook State School for the Mentally Retarded and they do have some information in the film about that. So you see little different pieces that give you, I think, an understanding that there was more going on than just what people are seeing
Selina: So it’s a mosaic?
Judy: It’s a mosaic.
Selina: Do you think it might give people courage to go and do more?
Judy: So, after each showing, there was a discussion. You know why do you think this has taken so long to get this story out? You know my answer is, the media hasn’t covered it, the people haven’t demanded it. Now that they’re seeing, it’s not just the film, it’s the backing of the film, because there are other good films out there. They’re all different, but there are some other quality films, documentaries, of different aspects of the movement. But the fact that the Obamas and Netflix are backing this, puts it at a whole different level. Plus, and I think this is very very important, Jimmy, Nicole and Sarah are all professionals in their fields and so they came together with recognition from their peers and so it was their peers that were also saying why didn’t we know this? And so when looking at other pieces to be done, I really do, I mean on some level we have to hope, I really do hope that people’s ovations and I think genuine comments on how the film moved them will result in some of them looking at what more can be done to document movements.
Selina: So, if that wasn’t exciting enough, next month sees the publication of your autobiography.
Judy: Memoir, my memoir!
Selina: Your memoir (laughs), so congratulations! What made you write it now as opposed to earlier or wait a few more years cause you’re so young!
Judy: Well I’m 72, so I’m not so young anymore, I feel young right, but I am young at heart. Anyway, people for years’ have been telling me that I needed to write a book but Selina you know the reality is I’m a good speaker, I’m not a confident writer. So to sit down and think about writing a book took me at least three seconds to decide no I could never do that! So what happened was a friend of mine introduced me to a company that was interested in the story and they helped me get an agent and a woman to write the book with me. So it’s my story and the primary writer is a woman called Kristen Joiner.
Selina: Was it interesting to kind of restructure your life in retrospect?
Judy: Yeah it was very…I don’t like to talk about myself so writing a book about yourself is kind of difficult. And also, I feel very strongly that my work has advanced because I love working with other people. It’s like I talk about how I’m from Brooklyn and how I can be a mouthpiece, but that if you look at any of the work that I’ve done over the years its been me and many many other people. And we each play a critical role.
Selina: Do you think it’s possible to be as activist, as radical now as it was then?
Judy: I do, I mean I feel we in the United States over the last couple of years with the president in the White House who has been so, for many of us, he does not represent who we are, either as individuals or as a country. And when he was first elected and came to office there was a mad push on trying to get rid of a piece of healthcare legislation that the Obama administration had been able to put in place. And there were many disabled people from around the country who came to D.C. and were protesting and I believe that those efforts were a significant reason for why the administration was not able to do the roll back that they wanted to do. And it was people who could get themselves on the ground, who were doing that or others in wheelchairs like myself and Marca Bristo and others who got arrested because we opposed what the administration was doing. So the film I believe, and the book, examples of what disabled people have been doing is how, as individual people, we’ve become empowered through these activities. And when you talk to younger disabled people who in the United States call themselves the ADA generation and they define themselves as people who have to now fight for effective implementation of the Americans with Disabilities Act and other pieces of legislation. And I think there is a growing number of younger people who really are recognising that they have to be a part of this fight so that we can move to the next level of where they need to be.
Selina: It’s coming up to International Day of Women on March 8th, Judy as our ambassador at Leonard Cheshire and somebody who advocates on behalf of disabled people and for disabled people, what do you think are the challenges facing disabled women in the next five to ten years?
Judy: I believe that the challenges facing disabled women are the same that have been facing disabled women for a long time! That being, in many communities, that being seen as an equal. When we look at women around the world we need to look at the fact that there are those of us like you and me Selina who acquired our disabilities early in life, but many many of the women and men around the world acquire their disabilities as they get older. There are natural things happening to people and then there are disabilities that are caused by violence which can be the result of sexual assault or war or other types of traumatic experiences. And just the fact that women in general are still fighting for equality and so disabled women, and we can’t just talk about disabled women as one group, but we need to talk about disabled women who are Black and Latino and Indigenous populations and others. And so then there’s the multiple forms of discrimination that those women with disabilities are facing. The issue of empowerment is really critical, the ability for women and disabled women to be able to look at how to ensure that the women’s movement is more representative of the breadth of the women’s movement. Many women in the women’s movement who may have hidden disabilities honestly don’t know that they have a disability, people with diabetes and epilepsy and cancer and heart disease and things of that nature, they never have seen themselves as having a disability. And so their stories aren’t being told. And the women with more obvious disabilities are also needing to look at how to tell their stories more. There needs to be more support for not only disabled women’s organisations, but also for the inclusion of disabled women in general disability rights organisations. So I think we still, as disabled women, face discrimination in our own movements about the roles women can and should play. So it’s very complex, but I think what is really exciting right now is when you look around the world at who some of the major leaders are, the Special Rapporteur on Disability for the UN, Catalina Devandas is a women, Rosangela Berman Bieler leads the efforts at UNICEF is a disabled women, Theresia Degener who was the chairperson of the Convention of the Rights of Persons with Disabilities committee who leads the review of country reports and disability rights for their respective countries, all women, all very powerful disabled women and there are many others. So I think we are definitely seeing good things that are happening, there are many organisations around the world right now run by disabled women that are really focusing on working with other women to help people really move forward and become more empowered and gain the knowledge that they need to be able to make a difference in their local and national communities. So there are positive things happening.
Selina: What do you think if you were going to give advice to younger people to help gain equality, what kind of tips and advice would you give?
Judy: I think what’s important to allow the momentum of the voices of disabled women to come forward both individually and collectively on particular issues, is that donors that are supporting women’s rights issues demand that the organisations that they are working with are meaningfully inclusive of disabled girls and women. That to me is the bottom line. As well as helping to provide support for women’s organisations particularly in certain parts of the world, in order for the women to be able to come together. So we need to, if we really as a society are looking at equality for people, including disabled people we need to look at who is supporting that, how are they supporting it and are issues affecting disabled people really meaningfully integrated in that. For younger people who have disabilities, or allies who…maybe a brother or sister or a friend, I think the film that I was recently in called Crip Camp and what’s important about that film is the voices are all of younger people. And we didn’t need anybody to tell us that we had a right to speak up. When we were in our own environment by ourselves we really were learning by working together that we had a vision of what we wanted to have happen. We didn’t really know how we were going to make that happen but I think there was a fortitude in our souls and within our group that once we were able to, speaking for myself, that in many ways the ability for me to be with other disabled people at a young age where we were talking about what are the barriers that we’re facing and what are the solutions that we believe need to happen. Being able to have that time together really made a dramatic difference in our lives. And for the younger people today, I think one of the real challenges are how do they come together? Because I obviously completely believe in integration but I also believe that there’s really a time, an unstructured time, that people need to be able to come together to kind of gain an ability to think in a way that they maybe can’t do on their own. Or for me I find being able to spend time with people for a protracted period of time really does help me learn from other people, take our ideas and mash them around and come up with a plan, strategy. So young people should not be waiting for permission from older people to do something. They should move forward. I think intergenerational work is also really important and learn by doing.
Selina: We just wanted to talk to you a little bit about Leonard Cheshire and why you chose to be our global ambassador?
Judy: Well Leonard Cheshire reached out to me to see if I would be interested in being a global ambassador and I said yes because I appreciate much of the work that is going on in countries around the world where Leonard Cheshire is working. A focus on youth with disabilities, a focus on women, a focus on leadership and empowerment, all of what I believe is very important. And there’s been some fantastic work that’s gone on in Great Britain for many decades and I think those efforts also are part of the impetus for the work that Leonard Cheshire is doing overseas, recognising that it has to be the empowerment of disabled people ourselves to be able to lead the movement and I believe that Leonard Cheshire is definitely focused in that direction in their international work.
Cathy: So the impact that Judy’s made has been so vast and I think just from listening to her story and how you know Crip Camp came about is absolutely fascinating and I can’t wait to watch it on Netflix. I’ve already put a little reminder on my Netflix account and you can do that with the little toggle so it gives you a reminder, it comes out on the 25th of March.
Erin: Yeah so now we want to know who else empowers you, especially for International Women’s Day, are there any other disabled females that have really empowered you and done things that have made you think wow that’s amazing, so let us know by tweeting us @LeonardCheshire and hashtag The Disability Download, and remember as always please remember to like, share and subscribe to the podcast.
Cathy: I’m Cathy
Erin: And I’m Erin
Both: And this has been The Disability Download!